Tuesday, November 10, 2009

Oxygen, Please

Yesterday I stopped breathing at least five times..and managed to recover. Support comes at the most unexpected times from the most unexpected places. I asked for help, resources...and I received it all - in two days. Miraculous and beautiful.

I have had the extreme pleasure and fortune to have been working with five exceptional women passionately involved in parental support in Deafness. Five intelligent women who have been around the block gazillions of times before I even learned to crawl in this environment. I have complained about how frustratingly slow Italy is in responding to requests and how difficult the process has been- note: they have ALWAYS come through in the end- but I've had to sweat so many times. I posed the simple question to the ladies: Has anyone got any material regarding pediatric courses in Newborn Hearing Screening and Deafness? Pauline Walker from the UK gave me the name and an email address of Gwen Carr and she responded in two hours of my request from her cell phone on vacation to tell me she would be returning on Monday and would get back to me on Tuesday. She replied to me again on MONDAY!!!!

*Humble and grateful me*

Leeanne Seaver of Hands & Voices sent an appeal to her contacts (you should have only seen the email she sent) and I received replies two days later from Christine Yoshinaga-Itano, Mary Pat Moeller and Cheryl Johnson. Note: I stopped breathing after every single one of their emails filled with excellent resources and ideas, aside from the fact that they are all leading researchers in the field who I cite when giving presentations. I may have well received emails from Angelina Jolie and George Clooney- SAME EFFECT!

*USA USA USA*

We had a SKYPE conference call with the GPOD women last night, my first one ever and it took me at least three minutes to figure it out: UK, USA, Italy, Australia on the horn. We discussed the survey and while I can't go into the details right now because we are still collecting data, I will say that we have results from over 28 countries worldwide...thank you so much for completing the survey.

I honestly still ask myself how the hell I am a part of all of this and the remarkable thing is that it just keeps getting bigger...all because of our book- the starting point that catapulted me into an arena that has expanded my mind and has given me the opportunity of providing resources to others that were so lacking during our experience with Jordan.

Sharon, one of my guardian angels/devil's advocate:-) who I met through this blog left a comment that I still have not answered. She asked me if I discuss sign language as an option when I meet with these families. My honest response is no, I don't. Not because I don't believe in sign language, but because to propose sign to a family whose child has just been diagnosed as being deaf, I would need to have resources. I had contacted the President of the NAD equivalent- ENS and never received a reply. I certainly can't invent things myself, especially in Italian. While working with these families I listen and offer support based on our experience, many times it's just one phone call where I reassure them. Then, they take it from there and do their own research. I am not adequately armed to arm them.

*Divine Providence*

I met with Dr. Elena Radutzky today, a fascinating woman, about an American Fulbright scholar coming to study in Italy. Dr. Radutzky is just an unbelievably phenomenal woman with a history of experience internationally, and at our meeting she started pulling out names and email addresses of people who are just the contacts I need to supply my missing information. I seriously find it incredible how the right people at the right time step in line in this entire process. The road has been paved and now I must walk it and plant as I go along for the next person who chooses this path. I don't feel like there's a choice, it just is.

*Thankful?*

I am the most grateful person in the world right now. Aside from the exceptional men I have had the privilege of working with, and I have been working with truly amazing ones, I will say this:

No passion exists like that of a woman. No level of empathy surpasses that demonstrated by a woman. And when you combine the love of many mothers with the passion of many women, you build Rome in a day.

9 comments:

What a wonderful post, Jodi! I agree it seems like everything is falling into place for you-- and to me that means you've found your calling! I am in awe of what you've been able to accomplish in the short time I've been reading your blog. Good luck and God bless!

Did Elena tell you about the "Sportello Sordità"? It works very well. Anybody who has any question at all about deafness can call, and they put you in contact with an expert. For example, if a teacher needs help with a deaf student, she can call this hotline for advice on didactics; or a parent who needs help navigating the bureaucracy can get legal advice. So far, I think it's only been publicized by word of mouth, but I think it could be an important resource for your booklets for parents.

For your friend who asked whether you provide info on sign language, I'd say that in my experience in Italy that's always been a bit tricky. Because often sign is proposed as an alternative to CI's, even in an all-hearing family. I have trouble with this idea, especially coming from hearing people!! Unfortunately, there are still many prejudices on both sides....

How ironic, I just got in touch with Mary Pat Moeller, too! To my surprise she also responded to me within minutes after I sent my e-mail to her.

I will be going to Omaha next week and plan to stop by Boys Town to tour their office and collect resources from them. If there's anything that you need. Let me know. I'm also heading to Boston and DC. Do you know of any organizations that I should be talking to?

I've been busy contacting people in my hometown, Seattle, to find more early intervention resources that will help me when I come over.

I'm so excited to be interviewing successful deaf individuals and families to learn more about their experiences with early intervention - what worked and what didn't. And I hope to interview those key health professionals to get their POV, too.

Like you, I've been so grateful that support is falling into place and that we're all eager to work together. Wonderful things are bound to happen and I can't wait to work with you soon enough!! :)

Anne,We talked about the "Sportello Sordità" and we both know you- I can't remember how she knows you, but she does. AND...YOU ARE A MEGA-MINDREADER!!!! THANK YOU SO MUCH FOR THE INFORMATION- I'M POSTING IT ON THE ITALIAN BLOG. You like dropped off the face of the earth- hope the boyz are doing well. Anne- I'm going home for Thanksgiving for the first time in 13 years!!!!! So excited. Hugs to you...and thank you as always.PS. One of these days I have to send an email or meet Prof. Martini- feel free to put in a good word *smile*

Christie- I'm really excited for you and I know you can't wait to come. Gather all the resources you can and prepare to observe more than anything else. The atmosphere here is very political and the language difficulties on many levels will be very frustrating. Prepare to take it easy for the first two months and to absorb as much as you can from the environments you will be in. It is a totally different reality here. And I'm putting it lightly...Thank you...and hugs!!

Aaahhh, that's so exciting about Thanksgiving; have a wonderful time with your family!!! I love Thanksgiving and when I lived in the US that was hands-down my favorite holiday. It's just not the same when you're the only one celebrating, but we probably will anyway. It's hard eating all that roasted turkey and pumpkin pie at 9PM, though!!

Maybe the holiday will make its way over here, like Halloween. Who knows?

Happy Thanksgiving.....I am thankful for a lot of things--friends, family, health and most of all thankful to have access to wonderful people I meet on-line!

Been a while since I've been here and see that you've met Dr. Elena Radutzky. I worked with her on the Italian/Gallaudet fulbright scholarship program for several years. What a wonderful superwoman she is and so full of resources!! I miss her a great deal. Glad you had the chance to meet her.As for ENS....it's a long story and I doubt that you'll get much from them. I'm sure Elena can fill you in and gave you additional resources. Jodi, while I do understand your feelings about not being able to recommend parents to learn sign language while you don't have much resources but in hindsight....wouldn't you have liked to be able to communicate with Jordan during the times you and Jordan could not communicate effectively. It's possible that Jordan's frustration could have been alleviated if he could have communicated better....he is still deaf when his cochlear implant is off at night, he is still deaf when he goes swimming without his implant, he is still deaf when he is in the shower, he is still deaf when his implant is not working (hope that never happens). In spite of it.....I firmly believe that it is very helpful to alleviate frustration between parents and an infant if parents are willing to incorporate sign language in their lives. It is fine if the sign language fades away in the background when the cochlear implant and auditory portion is successful for the child. To deprive a newborn child language from onset is unimaginable to me. I think that is being very selfish.

Jodi....left out 2 things, want to be armed with resources?? well...you got one in Italy and that's Elena Radutzky. She's a wonderful resource for LIS (Italian Sign Language, education ,etc etc.). While you are home in Baltimore...take time to visit the Maryland School for the Deaf in Frederick, MD. Go see James Tucker, the superintendent of the school and tell him I sent you. You need to visit the early infant program ...it is awsome and a good program. They'll arm you with resources.

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